Labels Have a Place: Thoughts on Labeling Children with Special Needs

*This article was originally published in March 2012. It has been revised and updated.

Labels Have a Place: Thoughts on Labeling Children with Special Needs

I have spent years of my life searching for answers for my daughter. I have sought labels and diagnoses because I want to know what’s going on and how to help my daughter reach her full potential. We have gotten some answers, although there’s a lot that remains a mystery. I have shared these diagnoses occasionally but have mostly kept them to myself.

Why am I not more transparent? It’s not because I mind people knowing what we’re going through. It’s more because I don’t want to be known as “the mother of the child with ________.” More importantly, I don’t want my daughters to be known as “the kid with ________” and “the sister of the girl with _______.” It happens.

We are not defined by our own or our children’s disabilities. We are people who happen to have a certain diagnosis. I love to read, write, and spend time with my family. I am a daughter, sister, wife, mother, and friend. My older daughter is a book lover like me. She loves reading and enjoys studying about animals and how the body works. She enjoys knitting, writing songs, and choreographing dances. My younger daughter, the one who needs an extra measure of love and care, loves all things pink and lots of sparkles and glitter. She loves to dance, sing, teach her dolls and stuffed animals, and create intricate sculptures from play dough. She makes up stories and draws wonderful pictures. We are unique individuals who are affected by labels, but we are not the labels.

Who do I share diagnoses with, and when do I share? I tell all the medical professionals we work with. Every diagnosis we get is another piece of the puzzle we need to figure out exactly what’s going on. The consensus seems to be that we are dealing with an undiagnosed genetic disorder. It’s critical that each specialist we see knows what everyone else is saying so we can figure it out.

Other than in medical situations, my rule of thumb is that I reveal the label when doing so will benefit my daughter. When it becomes necessary to ask for an extra measure of compassion and kindness or when she needs accommodations because a physical task is beyond her, that’s when I gently let the person know what’s going on and why she needs help. I also share when seeking support for myself or my family or when offering encouragement to others.

Most of the time, I think my daughter’s diagnoses should be like the tags on clothing—hidden, not scratchy and irritating, and only brought out when necessary to read the directions for care.

I totally agree!!! It’s important to know what you are dealing with but it’s not something that should be sewn on the front of our shirts like a Scarlett letter. I love how you put it…”needs an extra measure of love and care”…that’s how I feel about my son and I think that’s what people should think about me…with my medical condition. But sadly, that doesn’t seem to happen too often. Often labels are said to hurt people or as they put it “protect themselves” from us. Makes for lots of lonely hurting people dealing with their issues alone. But I’m so grateful to know friends like you Jennifer! So glad Rebecca “hooked us up!!” 😉

It certainly does make for a lot of lonely hurting people, Jen! I’m sorry you have ever felt like you’re one of them. I’m thankful to God for you and Rebecca both! He has brought so many wonderful ladies across my path online! He never ceases to amaze me—technology for Good!

Our middle guy has always been “off”. We didn’t officially get an Asperger dx until last August, but he had an SPD dx before that. No one at our church knew of, or understood, SPD, and so after getting his dx, we chose to be very open about it. He was 6 at the time, and so he was still young enough to not be able to really advocate for himself or to understand what was happening in his own body. We were very open with everyone so that they could know that what *looked* like VERY poor behaviors were not a lack of parenting or a lack of desire to do good on his part, but rather stemmed from his diagnosis. The Asperger diagnosis was more known, but we shared that, too. Our church was/is hoping to become more special needs friendly, and so we decided to be very open in hopes of paving the way for others who might come behind us. We have only regretted our decision twice, and that was due to confrontation with people who just needed a little more education – easily resolved. Since our being open, and as our church has been growing, more families with a variety of special needs kids, have come through our doors. Because our church family knows about our guy, the others aren’t viewed as outsiders as much as they might have been a few years back. People are very understanding & caring, and that really comes across to the parents!

Now, we are getting our older son evaluated in August & IF he ends up with a dx, we will NOT be as open about sharing his because he’s older, functionally participates in church & youth group, and we want to protect his image and who he is. With our younger guy, there was no question that he had a world of issues to work through, and we weren’t violating his privacy by saying, “THIS is why he can’t be in your room very well,” but rather were helping to educate those to whom we entrusted him.

It’s a fine line – and some days I’d rather crawl in a hole & hide, but other days, it’s definitely necessary to share, as needed. Praying for you and yours!

We’ve got multiple things going on here too, Becky, including a spectrum diagnosis that, like yours, came after the SPD diagnosis. It was actually a relief to get some of those labels and know there was a reason for the things we were experiencing as a family. Like you, I choose carefully who I share with and why. Thank you so much for sharing your story here. I’m enjoying our interactions on Twitter, and I hope we get to know each other better! I’m going to check out your blog now!

I didn’t mean for it to be such a long comment. 😉 It was a relief -huge relief -to get his diagnosis & know what we were dealing with. On the other hand, still tough, & cause for some pause to digest what was happening. Understanding from church workers & a team at therapy committed to helping him, and we’re seeing some tremendous growth!

No problem, Becky! I get long-winded myself. I’m really glad you shared your story. It has been a relief for us to get our daughter’s diagnoses too, but even when we anticipated some of them, it took us time to process the fact that what we suspected was really happening—and we were going to have to adjust as a family to deal with it. I completely agree that a supportive network, especially with friends, family, and church, along with medical intervention and therapy, are a blessing!

I’m so glad he’s making great progress! It’s slow here, but we are seeing progress! It makes me smile when I think of where we’ve been and where we are now. God is good!

I view labels as that “necessary evil” in order to get access to services, for insurance to pay for those services and also for schools to be more accommodating. And of course to know what the heck is going on with my child in general. This is especially important to one of my children with invisible special needs. In every day life, I wouldn’t want my children to be known and described by their diagnoses and we use “people first” language at home.

Beautifully written. We are not the disability labels we wear. On the other hand, we do need instructions about the “wear and care” of our families and friends. For example, children who are impacted by their ASD label are so very different. It’s never a one size fits all label so we should always proceed with an open mind, lotsa patience, and TLC.